Tobias Edwards, 10, loves loud music and loud toys. He holds toys up to his ear as they play soft songs, occasionally cracking a grin. He is the only son of Cindi and Josh Edwards.
Tobias is one of about 250 people in the world with ATR-X Syndrome, a rare genetic disorder caused by mutations in the ATRX gene located on the X chromosome that affects males. Tobias, born under 3 lbs, spent 86 days in the NICU before coming home and didn’t get a diagnosis until he was more than a year old. Symptoms include delayed motor skills and intellectual disabilities.
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Between his family and friends, he is known as “Super-T.”
“Since he was born early and was so little, he had to fight hard from the start,” Cindi said. “Ever since then, we knew he was a tiny superhero.”
A fifth grader, Tobias’ routine is filled with therapy, school and quiet afternoons at home. His world is filled by mom, teachers, therapists, nurses and his dad, who makes him laugh the most.
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To make it through his routines, Tobias uses leg braces, electric chairs and lots of hands to carry him through the day. At home, the braces can come off and the family spends time together doing things like blowing bubbles until the sun gets tired and the bubble machine runs out of soap. “I love you more than anything in the world,” his mother Cindi whispers to him.
This story was produced by Daily Egyptian editor-in-chief Lylee Gibbs for the 77th Missouri Photo Workshop
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